Freemason Jason Liversidge may be living with motor neurone disease, but he's not letting it hold him back from any challenge

When asked what motivates him, Jason Liversidge has no hesitation. ‘It’s simple: my children, my wife and raising awareness of disability and the part I play in that. It’s showing the world that having a life-limiting illness isn't a reason to stop.’

Jason was just 37 years old when he was diagnosed with motor neurone disease (MND), an illness mostly affecting people in their 60s and 70s. The condition progresses over time, leading to muscle weakness, paralysis and death – sometimes within months of diagnosis. Jason is now in his fifth year with MND, but experienced symptoms as early as 2008.

There are 5,000 people living with MND in the UK at any one time, affecting two in every 100,000, but Jason has also been diagnosed with Fabry disease, which is even rarer. According to his doctors, he is the only person in the world suffering from both conditions.

He’s reliant on the support of others and He’s reliant on the support of others and is unable to walk or feed himself. But being virtually paralysed doesn’t hold him back.

Since his diagnoses, Jason has been breaking the boundaries of what should be possible. In 2017 he became the first person to climb Mount Snowdon in a wheelchair. A few months later he made history as the first person with MND to abseil the Humber Bridge. He’s also ridden the fastest zip line in the world, lapped Silverstone in a Formula One race car and raised thousands of pounds for charity – all in the past year.

In 2018, Jason will attempt his biggest and riskiest record yet. Speaking through the voice synthesiser he now has to use, he declares: ‘I plan to set the Guinness World Record for fastest speed in an electric wheelchair. The speed to beat is 55mph, but I want to go close to 100mph.’

‘Jason shows people that no matter what happens to you, no matter how bad things get, there’s always joy in life’

NO BARRIERS

Sitting in the lobby of Tickton Grange Hotel in East Yorkshire, Jason is joined by his wife, Liz, and fellow masons from Wyke Millennium Lodge, No. 9696, into which he was initiated earlier this year.

‘Normally when a candidate is initiated, they do an undertaking – an oath. But, of course, Jason can’t speak properly; he can only talk through a voice synthesiser,’ explains Lodge Almoner Edward McGee. ‘So, the lodge sought permission for another member, Paul Matson, to have power of attorney and act as Jason’s voice. It was wonderful. Jason has proved to everyone that disabilities aren’t a barrier to becoming a Freemason.’

‘It was always something I had hoped to do – to follow in my family’s footsteps,’ says Jason, whose father, stepfather and grandfather were all masons. ‘The members have all been very welcoming. I’ve only been to the lodge once due to the summer break, so I’m waiting to go again and get a better insight. I’m looking forward to learning more about it.’

Whether it’s inspiring others through charity work, breaking world records or simply joining the Freemasons, Jason is resolute in making the most of his time. ‘He tries as hard as he can to live life to the absolute fullest,’ says Liz. ‘He’s amazingly positive – and so is our family. We’re determined to live life as normally as we can, for as long as we can.’

As Jason is the son of a Freemason, his daughters Poppy (five) and Lilly (six) have been receiving various forms of support from the Masonic Charitable Foundation (MCF) since his diagnosis. ‘The masons have done a lot for the girls,’ Liz says. ‘They’ve provided grants for extracurricular activities like horse riding and swimming lessons, and they've paid for school uniforms. They’ve given us money for some family days out so we can make memories together. The Freemasons are a fantastic organisation. They do so much good.’

WHENEVER AND WHEREVER

The MCF will continue to support the family however it can through grants that aim to relieve financial pressure. But it’s up to Jason’s masonic fraternity to be there when it matters the most. ‘There are two things we’ll do in the future,’ says Edward. ‘First is look after Jason and the immediate family. Then, when Jason passes away, we’ll look after Liz and the two kids. It’s a long-term issue. We’ll give them whatever support we can, wherever and whenever it’s appropriate.’

Sometimes the support will be financial. At other times it will be something as simple as a friendly chat or quick cup of tea. Either way, Edward lives just down the road from Jason, so he and his fellow masons will continue to be there for the rest of his family.

In the meantime, Jason has plenty of zest for life. Next up is a fundraising event for the Bendrigg Trust: potholing in the Yorkshire Dales. And then there’s the big one: aiming for 100mph in an electric wheelchair. Jason says it will be just like riding a bike.

‘I’ve always had a passion for speed, whether it’s on two wheels, four wheels or skis. But I can’t do that anymore; I can only drive my wheelchair,’ he says, smiling. ‘So, it seemed like the right way to go.’

‘Maybe people think Jason’s mad for doing all the things he does,’ adds Liz. ‘But it’s about breaking down the boundaries of disability. It’s about raising awareness of MND, of Fabry disease and of disability. Jason shows people that no matter what happens to you, no matter how bad things get, there is always joy in life. You just have to find it.’

Building from inspiration

Wyke Millennium Lodge was introduced to Jason through his power of attorney, Paul Matson, a builder and army veteran who served in the British military. In 2015, two years after Jason was diagnosed with MND, Paul received an email from the producers of the TV show DIY SOS, asking if he’d like to help renovate the home of a man suffering from a terminal illness. ‘Of course, I said yes,’ says Paul. ‘But before filming started, I had to survey the property – that’s when I met the owners, Jason and Liz. We quickly got to know each other and have been friends for a long time.’

Paul was so inspired by Jason’s determination that he started his own charity, Hull 4 Heroes, which provides homes for homeless veterans. One of his biggest projects has been to turn an entire row of derelict houses into a ‘Veteran Street’, complete with specially adapted homes for ex-service personnel. ‘It’s amazing. Because of Jason this whole thing has come about,’ says Paul.